‘Flying away with the angels’

JOSHUA LYTLE Oct. 31, 2006 – Nov. 25, 2010

On Thanksgiving evening 2010, Rita and Ryan Lytle cradled their son at the Cincinnati Children’s Hospital. They read his favorite books and sang his favorite song – “Frere Jacques” – as his life slipped away.

Born on Halloween 2006, Joshua, whose journey began in Springfield, was plagued with multiple health issues, including heart and brain abnormalities and severe hearing loss. Only skin was keeping his thumb attached to his hand, and his left kidney was located in the front of his abdomen.

At six months of age, Joshua’s thumb was amputated. At nine months, he had his first heart surgery. A second heart surgery was performed one month later. During one of the surgeries, the doctor hit a nerve, paralyzing one of his vocal cords. Joshua was mute for several months before his other vocal cord compensated for the loss.

“None of these things slowed him down,” said Rita, who described Joshua as a fun-loving, rambunctious little boy, with an incredible sense of humor. “He was a little ball of fire.” Ryan added: “He figured out how to write and play with his toys. He could do just about anything we wanted to do.”

In July 2008, tests revealed that Joshua had fanconi anemia, a rare genetic disorder that prevents the body from producing bone marrow. Eventually the Lytles began taking Joshua to the Cincinnati Children’s Hospital, one of the few in the country specializing in fanconi anemia. On June 17, 2009, Joshua had a bone marrow transplant.

Four days later, Joshua developed a high fever, his blood pressure dropped dangerously low and he went into severe shock. Tests later revealed that he had an infection. In addition, his lungs collapsed, forcing the medical staff to resuscitate him every hour for approximately 10 hours.

Doctors had little hope for Joshua’s survival, advising the Lytles that there was nothing else they could do to help him. They were told that he had only days to live. In a last attempt to save his life, doctors performed a risky bedside emergency surgery, opening his abdomen to release pressure inside his body and performing a procedure with his bowels.

On July 1, Joshua opened his eyes for the first time since he was rushed to the intensive care unit. He asked for one of his favorite toys, a ball frog, and sang “Frere Jacques,” the Lytles wrote in a journal. “Always the little fighter, he made it through that,” Ryan said. “He just didn’t give up.”

Eighty-one days after the marrow transplant, Joshua was released from the Cincinnati hospital. Not healthy enough to return to Springfield, he moved into the nearby Ronald McDonald House. Within a month, his blood pressure was high, he developed hepatitis of the liver, his kidneys were failing and he had serious breathing difficulties. Rita and Ryan soon learned that Joshua’s transplant was failing. He was again fighting for his life.

On Oct. 23, 2009, and Nov. 2, 2009, Joshua received frozen stem cells from the previous donor. Unfortunately, the cells were dead, and he needed the actual bone marrow, which he received on Nov. 20. Following the procedure, his blood pressure was very high, his body was swollen and he struggled to breathe. However, by the beginning of 2010, things were looking pretty good. The transplant appeared to work.

Finally, on June 10 this year, 376 days after the first transplant, the Lytles were able to bring Joshua back to their Springfield home. In September, his health again took a turn for the worse, and he was rushed to St. John’s Hospital. Within weeks, he returned to Cincinnati Children’s Hospital. Despite his ill health, Joshua still played and joked around, calling mom “Big Mama,” and dad “Big Kahuna.”

In early October, Joshua developed an infection in his brain and eyes. He began having weekly eye injections, as well as spinal taps to his brain every two weeks. By now, he was in so much pain that doctors kept him heavily sedated. By the end of the month, the Lytles learned that Joshua had multiple fractures throughout his entire spine, and osteoporosis throughout his body. His right lung was completely filled with infection. And he’d lost his eyesight.

On the morning of Nov. 23, Joshua had kidney failure and doctors discovered a blood clot on his neck. In addition, the right side of his face, neck and head was swollen.

As Rita and Ryan held their son on the evening of Nov. 25, 2010, Ryan saw a flash of light zip past the window. “We knew that flash of light was him flying away with the angels,” the Lytles wrote.

“Joshua handled everything with such grace and strength,” said Rita. “What he did and endured was nothing short of amazing,” said Rita. “He was our Superhero.”

To view pictures of Joshua and to read the Lytles’ complete journal, go to www.caringbridge.org/visit/Joshualytle.